Published in the Torch April 2012, page 9.
Dr. Marguerite Regan, a resident of the Washington D.C. area, was diagnosed with WM in 1995 at the time when Arnold Smokler, the founder of the IWMF, had formed the original support group – meetings of a small number of WM patients in his home. Seventeen years later, Dr. Regan recounts the treatments that allowed her to continue her career and shares her practical wisdom with advice for those affected by a diagnosis of WM. In an article first appearing in the April 2012 issue of IWMF’s quarterly magazine, the Torch, Marguerite summarizes the course of her illness, distilling what she calls “the most important lessons she has learned during the last 17 years” of contending with WM:
- View WM as a treatable illness, not an end game.
- Get a second or third opinion if necessary, and find the best doctor to treat you.
- Be an advocate for yourself. Keep your records from diagnosis on.
- Keep your job if you are able to. I worked fulltime during most treatments (at Lombardi Cancer Center of the Georgetown University Medical Center), and it was a welcome diversion.
- Surround yourself with life-affirming people and stay away from naysayers.
- Gather your support group, be they family, friends, colleagues, dogs, cats.
- Divert your focus with creative projects and hobbies.
- Research information but do not over-focus on WM.
- Join a support group but remember that everyone may have different symptoms.
- Maintain your sense of humor, an important asset in dealing with any disease and with healthcare providers.
- Do not focus on “what-ifs” but stay in the present and seize the day.
For the full chronology of Dr. Regan’s story, see the original article which appeared on page 9 in the April 2012 issue of the Torch.